May 18, 2007
DESPERATE MEASURES
by David Thorpe
 |
Puerto Rico's Colon. "I'm going to succeed," he says. |
On Monday, May 14, Puerto Rican AIDS activist José Colon announced that he would stop taking his HIV meds until Puerto Rico's AIDS Drugs Assistance Program waiting list was "totally eliminated." What made Colon — who claims he will let himself die, if necessary, to end the wait list — take such a drastic step? "Desperation and faith," he says.
As previously reported in the Update, the Puerto Rican government's mismanagement of its Ryan White funds has led to an AIDS emergency of catastrophic proportions. According to the National Minority AIDS Coalition and the Latino Commission on AIDS, San Juan's 20 community-based AIDS organizations haven't received government funds for more than year, forcing layoffs and shutdowns. The confusion and uncertainty surrounding the country's AIDS Drugs Assistance Program (ADAP) is perhaps the most dramatic illustration of the crisis.
ADAP is a joint federal and state program that helps low-income, uninsured or underinsured people with HIV afford costly lifesaving AIDS meds. While Puerto Rico's Department of Health (DOH) has acknowledged to Colon that 36 people are waiting for ADAP enrollment, the island's AIDS advocates estimate that the number is closer to 130 — and say that the real number is simply unknown. The DOH originally denied there was a waiting list, then later told the community-based organizations they shouldn't attempt to enroll clients in ADAP. There is some indication that only approximately 80 out of some 1,500 ADAP applicants have been enrolled. "We don't even know what the protocol is for how they determine who is on the wait list. That should be public information. It's like we're blindfolded," says Colon.
Puerto Rican advocates, who would like to see an independent entity in charge of the island's Ryan White funds in order to prevent corruption and mismanagement, are pushing for Congress to hold oversight hearings. "What we need is someone to show political courage and react," says Dennis de Leon, president of the Latino Commission on AIDS, adding, "So far our Hispanic Caucus hasn't exactly been courageous."
"I'm ashamed to take meds"
Colon will take his meds when he has a letter from Puerto Rico's health department secretary, Rosa Perez Perdomo, stating that the 36-person wait list has ended. Colon is not the first AIDS activist to go on a meds-strike in order to get justice for people with HIV. Zackie Achmat of South Africa's Treatment Action Campaign earned worldwide attention for his refusal to take meds until the South African government made antiretrovirals available to the public. "It's an effective tactic," says de Leon. "It has the effect of shaming the government — assuming they're shameable." Spanish television and Puerto Rican media have already come calling. "For radical change you have to take radical action," Colon says.
De Leon doesn't endorse Colon's decision to stop taking his meds, but like many of Colon's friends and loved ones, respects his decision. Colon certainly didn't decide lightly on his course of action. Although his press release gives the impression that he is relatively healthy — his viral load is undetectable and he has 450 T-cells — that impression isn't totally accurate. He has survived a heart attack and has a serious heart condition; he has diabetes; and he has Karposi's sarcoma on both legs. Doctors say he is too frail for the treatment for the cancer-like skin disease.
Nonetheless, Colon, an activist for more than a decade, believes refusing treatment is his moral imperative. "I am ashamed to take HIV meds while there are people who can't get them," he says. He also believes he will succeed, though he's ready to go "all the way," if the government won't listen. "I'm not scared. When you really believe in what you're doing there's no need for fear," he says, adding, "Jesus saved me when I had my heart attack. If he can save me, he can save those being ignored in Puerto Rico."
Colon is also driven by his own haunting experience of the AIDS epidemic. He lost his brother to the disease, and he was diagnosed with HIV in 1992, shortly after his lover of 17 years died from AIDS. Colon's current partner Anselmo Fonseca is also HIV-positive — he was part of the Puerto Rican delegation that came to Washington, D.C. in February to meet with legislators about the impending AIDS disaster. "José is stubborn and pigheaded and he didn't consult me about his decision, but I stand by him," Fonseca says.
For more information on Puerto Rico's AIDS crisis, visit the Latino Commission on AIDS' Puerto Rico web page. Colon can be reached at 787-688-9247; Fonseca can be reached at 787-283-8623 or afonseca62@gmail.com. You can also send an email to health secretary Perdomo at rperez@salud.gov.pr and demand an end to the ADAP wait list.